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Personal accounts

Informal carers


Carmel Geoghegan

  Ireland’s National Dementia Strategy, while welcome in principle, is not providing changes on the ground.

Supports are at an all-time low in Ireland and, particularly if you are living in a rural area, services and supports are non-existent. Rural and social isolation are major issues for both carers and people with dementia.

We need more joined up initiatives – getting all groups working together to build awareness, give support and human contact to all effected.

As a former primary carer for my mum, the most difficult part of caring was the isolation and loneliness that came with the winter afternoons, dark at 3.30pm – probably raining – West of Ireland and no one would be calling or checking in on us until next morning when a formal carer would call for 20 minutes to help get mum up, showered and dressed.

My mum was non-verbal for her final year – while we communicated perfectly well, I would love to have heard her voice. The silence at times was deafening as human contact is vital for all of us to flourish and remain productive citizens.

Having been in a position to care for my mum, it was the most rewarding thing I have done and I would love to see early diagnosis, signposting to various supports/services if available and more families empowered to care for their loved one in their homes, which is where the majority of us want to remain.

 

Carmel Geoghegan was the primary carer of her mother and is the founder of Dementia Ireland. She is supporter to Helen Rochford-Brennan (Chair of EWGPWD).


Nélida Aguiar

 

In 2009, my father passed away, and perhaps with the emotional shock my mother experienced, she began to experience a pre-dementia (slight cognitive deficit). Later came the diagnosis of Alzheimer’s disease. My mother and I had to readjust our lives and face the stigma of an incapacitating and limiting disease.

I changed my personal life, I stopped having a social life and I decided to face and fight against the stigma of dementias, because I soon learned that what does not kill us gives us more strength. My mother had to be cared for and she needed an informal carer, and that role fell on me, my aunty and sister.

I have tried to be active in defending all the rights of people with dementia and their family caregivers. The work of my mother in the EWGPWD (European Working Group of People with Dementia) has allowed us to have a more comprehensive view of the reality of our country, especially when compared with other European countries and in recent years, my mother and I have been very active and involved in many actions that relate to the struggles experienced by people with dementia and their informal caregivers.

The provision of informal care has too heavy a cost for those who do it. The impacts are economic, physical and psychological. There is a huge risk of poverty, abandonment of employment, isolation, breakdown of relationships and social life, depression, exhaustion and stress.

There is scarcity of formal care, home care services and other services are few and make the family responsible for care, overburdening them and, in a certain way, disempowering the state and the family. The informal caregiver is not guaranteed their right to rest, nor the possibility of reconciling care and professional life. There is no social or monetary support, nor the recognition of care for the purposes of career contributory.

Because this is a theme in particular, I have, along with my mother, been fighting for an Informal Caregivers Statute, because it is opportune that something is done on this theme for all of us.

 

Nélida Aguiar former carer for her father, current carer/supporter for her mother, Idalina Aguiar (member of EWGPWD) from Portugal.

 

 
 

Last Updated: Friday 26 April 2019

 

 
  • Acknowledgements

    This report received funding under an operating grant from the European Union’s Health Programme (2014-2020). The content of the Yearbook represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains
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